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Saturday, 17 December 2011

The Very Definition of Irony

I am Sue Marsh. Disability Campaigner.

With just 4 or 5 weeks to go to save Disability Living Allowance, I am working flat out on major research aimed at protecting 3.2 Million vulnerable people from losing benefits that they rely on to survive.

I have severe crohn's disease. Probably one of the most severe cases in the country.

I have had 7 major life saving operations to remove over 30 obstructions (blockages) from my bowel.

I take chemo-shots every two weeks that suppress my immune system, ensuring that I regularly have to fight infections. Exhaustion, pain and nausea plague every single day of my life.

I have osteoprosis and malnutrition.

I have had major seizures and a stroke.

Nonetheless, I have just heard from my own Disability Living Allowance application, that it has been rejected. Completely. I will receive no support at all from DLA. Despite claiming successfully in the past, despite only getting weaker and more frail and less able to live independently, my reconsideration was rejected.

The only option now is to appeal. I will have to fill in a horribly complicated appeal form over the Xmas period, wait up to one year to go to tribunal, and probably go bankrupt in the mean time.

The state will pay thousands to hear my appeal.

The only conclusion I can come to is that if I don't qualify for DLA, no-one with bowel disease can.

The reasons they gave for the original rejection were nonsensical and didn't relate to he information I had given on my form. Today, the letter refusing my reconsideration had no details at all.

I honestly thought that sense would prevail. DLA is not (yet) ESA and decisions are usually taken with at least some logic.

So do I carry on fighting for DLA for 3.2 Million or fight for myself? There simply aren't the hours in the day to do both. There's no contest is there? The 3.2 Million must come first. The deadlines are even the same!!!

I just need some help. I cannot clean my home properly any more. I often can't look after my children or even myself. My husband takes more and more time off work to care for me. It costs me £70 in petrol every time have to go to the specialist hospital 130 miles away from home. I must spend more on good quality food, or I just get more ill. I don't want the world, I just want to survive.

212 comments:

*facepalm* For. Feck's. Sake. I know that right now they just seem to be telling people no rather than yes because they figure people will give up. But I would appeal anyway. You can ask them to look over it again - you may even be able to get Citizens Advice Bureau to help (if they haven't closed their appeals section like mine has). But DO appeal it. Chances are you won't even have to go to the appeal tribunal - it will get overturned before you even appear, just as my son's did. Yes, it's wasteful and ridiculous but they WANT people to give up. Don't do it.

Just fill out the one page form and they'll have to re-review. Then I'll walk you through the rest if need be. Do NOT take calls from them by phone - ask for everything in writing. Fight your other battles, agreed, but I can try to help you fight for yourself as well.

I'm beginning to think they're trying to reduce the DLA caseload now, so when PIP comes in, and fewer people are eligible for it than have been eligible for DLA, they can point to previous years DLA figures and go "see, just as many people get PIP as DLA".

Cynical?

Anyway, fuck this shit Sue, fight for your own DLA first and foremost, you need to stay sane & as healthy as possible.

Absolutely disgraceful and ridiculous!! Am doing my best not to swear!! You need to do this appeal for yourself! Do it and share the work involved in the other stuff out between the many of us who are willing to help. The people who you know the best who can do this blog for you - see if that can happen. You need to make sure you win your appeal so that you can eat the food and get the care and syupport etc, that you need for your condition! barbsisi xxxx

Hon, I have gone to tribunal for DLA & ESA...get CAB involved a friend helped me with DLA but CAB helped with ESA and they were amazing and visited me, I couldn't get to them. If you have the support of them as well you can keep going for others but to help others we also have to help ourselves...get cab to do the appeal...hugs x

I'm still waiting to see what happens after CAB filled in my ESA50 for me a month ago. So I am waiting the medical date now...last year this time I had tribunal looming...tribunal is a more human face of the system x

Oh last time I was turned down for appeal I sent them a poem I wrote about then trying to kill me...lol...and of the panic attack it had brought on...they ignored all my needs but overturned the decision and gave me lowest rate of care without tribunal. I probably should have appealed that decision as I needed mobility but I was too tired to fight any more at that point. I was alone with it and had far less people behind me or willing to help at that point...

Robin - I can't, I just can't. It will be a miracle if I can get this research out. I simply do not have the spoons or the time to deal with an appeal too. Something will suffer and I CAN'T let it be vital research that might make a difference to people way, way more vulnerable than me.

I'm honestly not being a martyr. It just isn't in me to put myself above something so important to so many.

God damn, Sue, I don't know what to say. If I were closer I'd come and do housework for you or something. It's revolting that you're having to do the Government's job for them when you're too sick to even have one of your own. Their sheer incompetence, and the incompetence of many people when it comes to thinking for themselves, disgusts me.

Sue, said from a loving place...if you were closer I'd smack you right now. The world and the campaign does NOT solely rest upon your shoulders - file the bloody tribunal appeal, and then start delegating some of the research work; there are people here and willing, you just need to figure out how to divide it up.

None of this "Help the more vulnerable thing"...you're using the government's own rhetoric now. You ARE the more vulnerable, you are NOT All Right Jack, and if you need help (which you obviously do) then will you please ASK FOR SOME???

*exhale* there, done now. What do you need doing? Hell I've a scanner and a printer.

Sue,Fight your case back and then you will be back stronger and better to help the rest of us in society who too suffer this type of inquisition set up by a government determined to be as nasty and underhand as possible.

This is dreadful news :( I cannot imagine how upset and angry you must be feeling. I'm in turmoil after losing ESA this week and the feeling is utter dejection and fear. This decision is outrageous given your medical history and the ongoing symptoms. Urgh! It makes me furious. If you (super smart disability and welfare campaigner) can't apply for DLA and get it first time, I don't know who can. My dear old Dad reckons they have a policy in place to reject all claims in the first instance to force them to appeal and get as many to drop out as possible. Maybe he has a point? I do hope you can still continue to fight for the rights of people like me, but if you feel you must take time to fight for yourself then you must. This is the new order now isn't it? Surival of the fittest? Every man and woman for themselves. We can't let them do this!

Sue, if you don't look after yourself you'll never be able to continue trying to look after the rest of us.

I'm almost sure that what they've done is just see the diagnosis and stopped reading there - and not even looked at the information about how severely impaired you are. On those grounds the single phone call required for them to look at it again is probably a good investment of energy - I'd genuinely be quite surprised if you needed to take it further than that.

Please, Sue, don't think you're expected to let your own health suffer in order to help others. There really is no contest- you're no good to us spoonies dead!!

Any campaign or project has to be bigger than any personalities, or else it is bound to fail. You know this, you know what it takes to campaign for a political party. Please believe that this fight must continue with you able (and willing) to take a step back and look after yourself for a while.

I know it's hard to that for yourself, so I'm asking you to do it for your family. They need you, Sue, probably more than the rest of us. And they are the ones picking up the pieces after each crash. Spend some time with them, and then work out a REALISTIC amount of time for campaigning, given your other committments.

Choose the tasks you can accomplish within that timeframe, and delegate, delegate, delegate! I'm sure I speak for everyone in our community when I say we will all attempt to do what we can to share the burden.

Wish you didn't have to make such stark choices. Wish this whole thing wasn't happening. But don't wish away the time you have with your family.

The appeal form is only like 4 A5 pages - very small. Then you just wait for the appeal bundle to come from the DWP and you'll have getting on for a year to sort your appeal stuff, if you can't get help from your local disability services.

You can carry on with the fighting you want to do in the meantime.

Or you can wait 6 months (not necessary but advisable so I'm told) then re-apply fresh.

Its up to you but please don't give up. Apart from the fact you need the help its a great advert for how rubbish the system is.

You are crazy, you must look after yourself first of all, then you can help others.

Pease submit the appeal form, if it is the same as esa then you only have 1 month 2 submit the appeal. you can state that you will submit your reasons & any additional evidence later once you have been sent all the paperwork & had a chance to get help & advice from cab or welfare rights. it then takes months for them to send you the paperwork & i think tribunals are sitting at around 65 weeks according to figures just out. thats plenty of time for you to get help & build your case, but you must submit the appeal form first & within the 1 month time!

www.benefitsandwork.co.uk have been an amazing help for me appealing my esa decision, & i won without having to go to tribunal. they have a free forum & the moderators are wonderfull at answering questions. they have a members only section where you can download all their guids for esa & dla & appeals etc, but it has an annual fee to join. I could email you my copys of the guides if you like or help you in any way i can.

if you need help for your campaign doing research or admin or whatever, then please just ask. if i am having a good day I will help in anyway possible, just email me. maybe i & others could take some of the burden off your shoulders?!

Get help with the appeal from an advice agency. There must be one near where you live. They should be able to take quite a lot of the strain out of dealing with it.

And if you do miss your appeal deadline don't give up, late appeals are easier to get accepted than you'd think.

As for the 'logic' of decisions for DLA, I have to say decisions flying in the face of the evidence are really nothing new. The population of Decision Makers has always included the breadth of humanity as well as quite a lot of other people who don't really qualify for that description and they're pretty much capable of anything.

You must sort yourself out first Sue. I suspect they know your name, and either did this to stop you campaigning or just 'try it out' - hoping people on DLA are not strong enough to fight...

You need help - FFS, where are the welfare rights experts, surely someone who reads Sue's blog can help her with this? She is fighting for all of us...legal eagle want to do his or her bit? WHOEVER READS THIS WHO KNOWS THE ROPES PLEASE HELP SUE FIGHT FOR HER DLA NOW PLEASE :-)Just do it eh?

I'm bloody angry , fuming in fact. What on earth is this wretched governmrent trying to do to people trying to live with disabilities? Oh, and don't forget Cameron yesterday claimed the UK was a 'Christian country' . Sue, get your appeal sorted out, you WILL succeed . I'm the meantime consider press releasing this blog posting, the public need to know what is going on.

Actually the first time I appealed DLA I wrote to them from my hospital bed and they took it as appeal. I just wrote how angry I was at how wrong they had got it and how trying to do what the report said I could do walk less than they said I could ended up with a trip in an ambulance...it was outside the appeal dates but I wasn't actually appealing I was telling them how badly wrong they had it...

My other half is appealing at the moment. The form we had to fill in (with CAB help) to start the process was very simple. We ended up getting a huge pack of the "evidence" they're sending the tribunal (basically her entire file) and then a form from the tribunal service that was also dead simple. That form implied that it's more likely to be 4 months before being heard, which seems implausible, but maybe they've partitioned their capacity so ESA and DLA go down separate channels so the ESA trainwreck doesn't pull the DLA appeals down with them.

Anyway, that's from the Liverpool office, though the appeal will be heard here in Lancaster. The CAB help also extends to paying for another report from the GP that actually addresses the points in question. I don't trust the government when they say the appeal hearing is straightforward and informal, but the CAB advisor, being funded from LSC (so presumably has some idea what they're doing) says that too, so we're a little more confident. It's russian roulette with the panels, though, from what I'm told. Some are sympathetic, some take the DWP's side on everything.

Sue read what all these cool people have said, look after your family first and that means yourself. This is a Marathon and they all need you as fit as possible and not sick and impoverished. Keep well and have a Merry Christmas, let me know if you are short of any chocolate and I'll send you all some :)

Sue, stuff the research and put yourself first for a change. There's enough of us out here to continue your good work for you. Get the appeal in. Take advantage of the offers of help I can see rolling in, including one of free advocacy. Honestly, if you don't take your own advice, how do you expect the rest of us to? Hmm?

It does take quite a while for them to get the balls rolling after the initial form - they then wait a little while for you to send in any other evidence, and then they do a reconsideration (another one), and then, if they don't change it, they send the big file to the appeal service (and to you), and then the appeal service send you a (really quite short) administrative form. You just have to get the written evidence in sometime before the hearing, and they'll even take new evidence on the day (but it won't endear you to them). You can also bring witnesses (no-one gets paid, but there you go).

It's a lot of work to do an appeal as well as it could be done, but what will (in most cases) be good enough is a lot less. Some people win with virtually no preparation, just turning up to the hearing. Those are usually the people for whom the case is so obvious the DWP representative end up looking sheepish when the members reach a conclusion within 5 minutes.

Appalled to hear this. It's proof - if we needed it - that the coalition's intention is simply to get as many people off benefit as possible, not to even vaguely "encourage people back to work": whatever that means. The attitude is the same across all benefits and the indistinguishable, facelessmass they see as being in receipt of them but the tales of those in IB is clear cold evidence of how brutal this government is. The Tories and Lib Dems lack any compassion. I'd also suggest contacting local media in the first instance. I hope your appeal succeeds.

This is horrible but doesn't surprise me at all. It happened to me too, despite things only having got worse with my health.I appealed - they listened, so definitely, definitely appeal. I do think they just blanket reject almost everyone who appies nowadays which disgusts me so much.

Guys!! Gentle reminder that people "putting yourself first" was kind of what got us into this mess in the first place.

This is not a marathon, the WRB passes in 5 weeks!!! Sure there will still be stuff to do after that, but I'm a political campaigner. I would never, ever forgive myself if I didn't do everything I could to make sure that even if/when the politicians vote this most disgusting legislation through, they had the facts and they ignored them.

I WON'T put myself first. I'll try to do the form, I'll accept advocacy if offered, but I will NOT let 5 million people go unheard.

Oh Sue, nothing surprises me anymore. It has taken a month for me to find out (via telephone, as I am STILL waiting for my copy of the documents)that the doctor has completely misdiagnosed my son, so no wonder he has been declared fit for work. He made no mention of the real diagnosis and put down that he was suffering with depression - despite the fact that my son quite clearly is not! We now have 2 weeks to send in evidence backing my claim...but I cannot get to see any doctor before 3rd Jan to get copies of medical notes to refute this other fellow, as everyone is on holiday.

I would NEVER have done what I'm doing if I.... it's really hard to find the words....cared about my own position. I stuck my head above the parapet so comprehensively, I always....I'm not putting this right. I always thought "someone has to"

I have an amazing support network, awesome friends, the best hubby in the world and a vast family. I knew that I would never go hungry or give up. So many others were nowhere near as lucky.

I'm honestly not trying to be a martyr, but this was NEVER about me. I don't care about the fame or the glory or the outcome even, I just have to do all I can.

If you want to help me, double, treble, quadruple your efforts to beat this bill. I will survive. Very, very many won't. Use this nutty decision to tell the DWP, press, anyone you like just how farcical all of this is. Everything happens for a reason.

I didn't mention the likelihood of you finding yourself up against the Paypal limit you eventually did as I didn't want to be Mr Gloomy again - I know I often am. Given this last, though, it occurs to me to wonder further, is there not now a bank account of some sort with your name on it that has money from donations flowing though it? Might that not give rise to complications regarding claims and income and so forth? I can't remember if you're on ESA, might you not get your benefits suspended (at least) if the DWP hear about you accepting contributions? I wonder if you've thought all this through as well as you might have done. But regarding your DLA, of course you must appeal. You can only save others from a position of strength so before anything else you have to keep yourself strong.

Carrying on from what Robin said, it might be worth dropping a data protection request in, broadly framed, to see if there have been any communications about you going around... though I'm sure they do those by phone or text these days after a few (minor) embarrassments in the past. I don't think targeting is likely (never attribute to malice something adequately explained by incompetence, isn't that the saying?), it's plausible.

Regarding DPA - you can ask any organisation to supply you with any information they hold on you. There is likely to be a small admin fee of around £10-15 (you can usually find this out with a phone call to the organisation) and if you can send this in with your application it saves time. They must respond within 40 days, if not you inform the data commissioner's office who will write to them giving 30 days for response. After that they investigate. If the organisation contines to withold info or supplies some but witholds other & it later comes to light you are entitled to recompense through the courts and the ICO will do this on your behalf

I think others have covered the "Your welfare is more important than welfare reform" business - and they're right. You are very important in the movement, but it's a lot lot bigger than you. Your health and happiness isn't.

So advice about DLA appeals;

1. It's not personal. It feels deeply personal. But the people I know who have been randomly turned down at different times, there's no knowing why it is that sometimes your number comes up. If you take it personally, especially when you've have past experiences of not being believed or taken seriously, it will be far more of a nightmare than it needs to be.

2. It's all about attrition. Eventually, you will get the benefits you're entitled to. It's just a question of pressing on, going through the motions until they give in. It's not even about winning arguments, especially when you've got a wealth of medical evidence behind you. It's a question of crossing your arms and saying, "Actually, I am entitled." over and over.

3. Outside help simplifies everything. If you speak to an advocate, especially if you get them to write things down, you could get the whole thing sorted in an afternoon. And an afternoon is a precious thing, but still.

Please, Sue, don't think you're expected to let your own health suffer in order to help others. There really is no contest- you're no good to us spoonies dead!!

Clair it's very difficult for sue as it is for me however unwell just to forget or give up on others and you will find that there are many like sue who will put others first before themselves and we must all remember that

That's very bad news to hear sue as you know i have fought and won for 30 years and still have to fight because i'm on permanent appeal and am judged monthly by my health care worker so that he can fill in any forms that have dropped on his doormat

i dont get any forms having taken out a court order based on the fact they the DWP were out to kill me so for everyone's sake i am not involved with the DWP at all directly

It's still tougf thow when your money gets stopped as you dont know why so you have to wait for your care worker to investigate and then have to wait to get it all back

It's a right pain as in reality your living a life of hell as your living in the pocket of the DWP every day of the week so that tragically gets to be the main subject of family life which is absurd but that's how it has turned out

I have never been able to put it out of my head for 30 years the forms the medicals my treatment by the DWP hence i look like a prisoner of war victim

My nerves are shocking any one would think i have been at war for 30 years with guns and the like on the battlefield but i can assure everyone the DWP are a mighty force with great power over the people ATOS also vast power the power to get you to kill yourself and that is some power and never forget that

Keep going sue your in my thoughts daily and that of my wife's as she get to hear everything of our trials of life

After 20 years I was finally diagnosed as a parasthesiac (the result of accidents caused by clinical flouride treatment as a pre-pubescent and my parents divorce/Mother's undiagnosed manic-depression), I ruptured my brachial artery in a domestic accident & 18 months later I had a spectacularly nasty motorbike accident that resulted in a complete fracture of my right femur (and nearly broken back hence "parasthesiac"), however they only took x-rays of my leg. At that time I was still suffering from the trauma of the brachial rupture (both accidents happening when I was a minor), which I now know diplays the classic attributes of agmatine activity in the brain..."In conclusion, a variety of evidence seems to suggest that excess extracellular agmatine may induce near-death experiences in susceptible individuals. Because agmatine is an NMDA antagonist released in substantial quantities in hypoxic-ischemic conditions, it satisfies the two key criteria that must be satisfied by any potential endogenous mediator of near-death experiences. Future research should help to further clarify the role of agmatine in near-death situations." From Agmatine and Near-Death Experiencesby Shawn Thomas (2004). As a result of trauma and parasthesia I became a self-harmer (and had some "help" from others), always needing to justify my existence to an unheeding state. I am now suffering from two serious health conditions (one of which can prove fatal), as a result of years of neglect and abuse (I am a medical cannabis user), my DLA (I am now on the highest rates), is due to stop in February but I still haven't applied for any more, I was evicted (from a housing Co-Op), moved twice and have received no support since I moved in to my current council tenancy. I am being forced to do all my own paperwork (I'm planning to take pictures of my poorly provisioned flat. and send them along with an application marked "very urgent"). A friend of mine was sectioned for having carbon monxide poisoning after she was forced back home she was admitted to Southampton General Casualty Dept. for (guess what)..carbon monoxide poisoning, following her release... A friend of mine was run-over on an anti-roads protest (illegally), but because he was at that time under some form of care as an outpatient from The Royal South Hants Dept. of Psychiatry he found he was unable to persue his case against the perpetrators. One Christmas....

Hi SueI would like to contribute to the DLA research work, if I can.Also, please, I'd like to pay for a year's sub to benefitsandwork.co.uk for you. Their guidance is simply excellent.I've emailed you about both,Love, Peta

I agree with everyohe here SUEY you MUST look after yourself and concentrate on yourself at this crucial time. I totally agree with GOLDFISH saying its not personal. they are just trying it on. Once you get all your fact together and get specialist DLA advice you should be ok. Your condition has not improved so there is no good reason why DLA should be cut. Their just trying it on. You fight back and you WILL get what you deserveALL the best and thinking of you over xmas

I don't think it's personal. But why? Ask yourselves, why should I put myself before everyone else? What makes me more important? What's the point of fighting for something they're about to abolish anyway? I said, I WILL do the form, I WILL accept any help offered, but it will not be more important than getting this done.

This research is not a bit of tweeting, a blog post or an article for the Guardian. It is proper grown up stuff.

PS Sue, my initial DLA award was only for 3 years and when I put in the renewal when it expired, I was refused (this was about late 2007). I was really shocked and rang them to ask why - they said it was because my epilepsy wasn't bad enough because I was (at that time) only having 2-3 convulsive seizures a year. According to the DWP, it wasn't enough. I knew they were lying because the Lords ruled on DLA and epilepsy specifically a few years earlier - their sole criterion was do you get warnings of your seizures. If not, even if you have only one fit a year you qualify for DLA (the reasoning behind this is that if you don't get warnings of an attack you can't put yourself in a safe place).

Anyway, I said on the phone I wanted to appeal, so it went to immediate review. That was rejected almost immediately so I went to a benefits advice office. They wrote me a brilliant letter reminding them of the Lords decision, quoting the relevant legislation and then we had to wait. It never went to tribunal. Within 14 weeks, they re-reviewed and awarded me for a lifetime (haha, I'll lose it under PIP).

So PLEASE put in an appeal. You must. I know it will take longer but you need this money. You have to fight for your rights. Sod the campaign - we can do it for you in the interim.

My DLA was refused, and I had to take it to Tribunal. Eventually, the Tribunal happened (10 months after the original claim) and all I did was wheel in to the room to be greeted by three Tribunal judges who said

" before we start, let us just say that a mistake was made and we would like to award you your DLA at xxx rate"

So please, do submit the form. Chances are, you will be awarded and backdated your due without even needing to submit any new evidence.

Meanwhile, research is not something you are the only person with skill to complete. You have a research plan? you've done the project management plan? then you will have a breakdown of tasks to delegate!!

please, don't underestimate the skills and abilities of your spoonie community- I'm sure there are plenty of people reading who have research skills. Just let us know how to help.

Sue, I wasn't aware of you or this research you're doing until someone linked me to this post.I read it through and I'm still seething with anger - and more importantly, I want to help.

I'm giving some money towards the research fund, but you should know that me and many others would gladly donate some cash to try and help with the lack of DLA. You're doing important research that could benifit millions of vunrable people, so yes, you are actually important and you should feel no shame whatsoever in asking for help if needed.

Hopefully it won't be needed, especially if you go to the CAB for help. Still, I don't expect the words of some guy on the internet to make you feel any better about the situation, but please remember the things I said in the last paragraph. And remember that I am definatly not the only person who thinks like this, and many other people would be glad to help.

I'll do whatever I can. I have some resources in the media who will gladly raise awareness of this situation. Private Eye magazine ran a story this week on the rejection of DLA applicants. Go and buy a copy or I will happily post mine to you so that you can read it.

You can contact me on my blog.

But heed the advice of others on here; on a plane you need to put your oxygen mask on first and then help others. I see no reason, unless I am missing the point, why you cannot challenge your own individual decision and still continue with your campaign. You can be assured of lots of help from people who sympathise with your situation and want to change things with you.

I am working on a report for Sue on the Benefit Integrity Project, a half-baked initiative the last Conservative government came up with in the midst of the election that turfed them out in 1997. They had already proceeded it to the point where it was already in motion and mistakes were made that meant it wasn't immediately cancelled.

http://news.bbc.co.uk/1/hi/uk_politics/141785.stm

I've still some things to check but will have something ready for Sue in a few days.

"I have severe crohn's disease. Probably one of the most severe cases in the country.

I have had 7 major life saving operations to remove over 30 obstructions (blockages) from my bowel.

I take chemo-shots every two weeks that suppress my immune system, ensuring that I regularly have to fight infections. Exhaustion, pain and nausea plague every single day of my life.

I have osteoprosis and malnutrition.

I have had major seizures and a stroke.

Nonetheless, I have just heard from my own Disability Living Allowance application, that it has been rejected."

Stunned -simply stunned! I agree with the others who have said it's time to concentrate on YOU for a while, it really is...your future. Give instructions to others regarding the Research/Guardian stuff, they are capable and supportive.

Why is is that despite everything we've seen happen over the past two years we still had a sense that there was some human decency out there....

I know it's irrelevant in this case, but I know how much this news will affect the spirits of the severely mentally ill....very worrying indeed.

It sounds to me like you have a very good case for being awarded DLA. However in your blog you have only detailed your condition. Except where you are very terminally ill your illnesses generally have no effect on the award of DLA.

My wife had cancer, a back condition that prevented her getting out of bed and a disability in one hand. Her claim resulted in no mobility award and just the lowest award of the care component. This decision was perfectly correct! Her back problem was diagnosed to improve within six months and her cancer was not terminal. This meant effectively she got an award only because she couldn't peel vegetables.

The nature of your condition suggests that you cannot walk unaccompanied 50m and that you need attention day and/or night. That should get you a decision- just being ill doesn't.

with this government refusing to stop the power companies charging obscene prices for their supplies resulting in the aged,sick and poorest in the community to choose between eating or heating and the new legislation on dla and incapacity benefits, who said euthenasia was illegal in this country

Sue, we all need to work together on tackling welfare reform. None of us will succeed alone. And you must take time to put your appeal in.

Is it ok if I promote Pat's Petition here (link on the name) - aiming to get them to Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families

Please all sign it and share the link.thank you - and good luck Sue - you aren't alone

Write to the Daily Mirror and get your story in there as an example of what the Govt is doing to genuinely sick and disabled people. May help the 3.2 million as well as yourself. i will write to my MP using your case as an example...good luck

If I'm speaking out of line here please tell me to shut up Sue, but I'm outraged by this decision, for all the rerasons you've mentioned. You need a social worker to arrange asap for direct payments for you asap as a disabled person and also a carers assessment for your husband as a carer...To my understanding.in theory BOTH of you should qualify for support and direct payments....and if any of your children are in a caring role as a young carer, their needs should be met too..it's complicated but I've been looking in to all this for my situation with my disabled daughter, myself and my teenage daughter as a young carer before she was 18.....I know this doesn't address the DLA problem but it is something to perhaps get you a bit of support..Good luck Sue xx Glen Fletcher Liverpool x

Hi Sue, I've been reading your blog for a while, as my girlfriend has MS and one day we might be reliant on benefits. Your blog and the information that I have been directed towards as a result has been a fanastic resource and really opened my eyes up to what is being done to the welfare system under the current governement. For that I am so grateful. I read your post earlier today while I was out and felt really upset for you.

I'm not sure what practical help I can offer, but if there is anything you specifically need, it might be worth asking, and then people with the relevant skills could come forward.

I did want to contribute to your research fund - is it taking more donations yet? Or is there some other way people can contribute?

You need to think about yourself too Sue. I know it's hard and I know you want to fight for everyone else too but do what you can do and fight your corner, whatever happens you have supporters online too.

I know how you feel in regards to Crohns, I don't have an official diagnosis yet but show a lot of the symptoms and after a CT scan/blood test I'm being sent for a Ultrasound, the most awkward symptom for me besides the cramping pain, is the joint pain. Not plesant when walking around feeling like your leg joints are in agony, forcing me to stop a lot. Seems to come and go in that regard.

I wonder, had he not beem a career politician and millionaire, would David Cameron have treated his son Ivan with the same contempt that is being heaped on the majority of disability claiments?[/QUOTE]

David Cameron would have been stuffed as he would not have been able to go along with these reforms at all Ivan dying the way he did brought it all home to us in that when your ill or disabled tomorrow could be your last Ivan's death has dealt all of the sick and disabled everywhere a blow of which many will not recover from and that with much regret will be the lasting legacy of the name Cameron

Sue I feel so bad for you, you are a marvelous woman who deserves recognition for all you have done and are doing for so many. I can only add my name to the list of people willing to do anything I can to help. Unfortunately I can only do admin type stuff but the offer is there if needed.Take care and take heart in huge support you have from us all

Appeal, appeal, appeal... I know it takes a whole load of effort and energy (effort and energy that you need just to get by).... but the way I'm seeing it atm, is that they're just flatly refusing people on first application and hoping to slice a big % off their caseload by doing that. Get into the appeal stage and they start to look at your claim properly. you are obviously, completely entitled to this and have every right to request they reconsider their decison. It is very sorry state of affairs just, just a cynical and appalling attack on the most vulnerable in society, they are number-crunching, knowing many won't have the will or the fight to contest their outrages decisions xx

1. "In a plane, you put on your oxygen mask before helping others". If the campaign is more important than yourself, fine, but you need the correct help in place to continue to campaign effectively. Therefore, your appeal should simply be seen as a crisis fundraising exercise for the campaign, not yourself.

2. The poster who wrote "I am Sue Marsh, disability campaigner", though not in the sense he meant it. It immediately made me think of "I'm Spartacus", which is in essence what so many of these posts have been saying. So much of the campaign work could be delegated under the right co-ordination and supervision, and there are already many volunteers responding to this blog. Make use of them.

read all posts... glad its here. im looking 4wud 2 my nxt reason 2 get on bbc london radio. sues help is sorted. mp and media all the way...keep going sue, its our reason 2 live, to look out 4 each other xxx

You have probably seen this re Crohn's & DLA http://crohns-disease.org.uk/forum/m-1289646126/ and this http://www.nacc.org.uk/downloads/disability/AdultGuide.pdf but thought I'd post it just in case. Seems important to request GP or specialist med evidence yrself to submit with claim and to check what they've written?

Playing devil's advocate for Sue here.I care for Sue very much and have in private suggested more delegation.

However I have also reluctantly recognised that there are *some* things that maybe she is uniquely placed to do.

Take for instance the recent fund raising which thanks to your generosity was successful in a matter of 24 hours. She *could* have delegated that to another. Let's say someone like myself. But because people like me don't have Sue's well deserved fame, we would still be waiting to achieve that target this time next year if ever!

The same applies to other tasks. Sue's fame and resulting networking has put her in a very special position. And so I wouldn't be surprised if there really are some things that would be extremely hard to pass on to someone else to do.

I think most importantly we should believe Sue if she says there is something that only she can do. Not to do so will probably only add frustration on top of everything else.

That said, I do think that right now, anything that someone else CAN do should and must be done by someone else. Because as vital as this particular last gasp research may be, Sue, you still do need to look after yourself as well as other people. I hope that somehow you will be able to do both.

I think that going ahead with your own appeal might be of more help and inspiration to millions of others than giving up.If anyone in the Cannock / Lichfield / Stafford areas is in the same position as Sue and needs some practical help or moral support, please let me know what I can do.

I once lost my benefit shortly before Christmas. I didn't even get a letter: between the time they made the decision and me realising that no money had gone into my account as was usual I had done my Christmas shopping when, if I'd known, I would have just told friends and family that sorry but I just couldn't do presents that year. As it was I ended up in tremendous difficulty.

I sincerely hope that you can find a way to delegate the campaigning work.

I think it will be hard for anyone to accept you not working on your appeal. I completely understand that you feel you must put the campaign first but I can't imagine anyone saying you made the wrong choice if you prioritise your appeal. Nobody wants to see you go under.

Hi Sue, (I'm an ex CAB advisor). You should get help from Citizens Advice or another benefits advisor, don't fill it in yourself. They can "look at the decision again" or you can appeal. You need EXPERT advice to know whether to go for "look at the decision again" or whether to appeal. The only time consuming thing will be sitting with them while they ask the questions and they physically fill the form in. You should keep notes, try to think what is different for you than before you had a condition or someone without it. I would suggest "look at the decision again" would be the option in your case but you HAVE TO let CAB etc. help as they deal with this every day. It isn't "either/or" you can sort the DLA and carry on with your other stuff with all the offered help too.

I'm really sorry to read this. Hard to believe they could deny you under the circumstances. I lost my pension for a little while but I appealed and got it back again but I am in AU. I was once a fellow Crohnie or so I was told from a biopsy and I had years of steroids leading to osteoporosis and now they tell me I have not got any sign of ever having had it. I am one sick lady though with gut problems, M.E. and fibromyalgia but I can have some good weeks. You sound like you are a victim of a cruel Government.

Hi SueI've had a quick look at the NACC guidance on DLA. It's written by the benefitsandwork.co.uk guys and seems to me excellent. You'll already know that the NACC site also has an (excellent) guide on DLA appeals written by the same guys. As far as I can see in a quick scoot through, there is ADDITIONAL info on the benefitsandwork site, available only to benefitsandwork members (such as a pack on DLA case law), which may be useful at some stage in relation to your DLA appeal, for use by you and/or any advocate. So, please forgive me just going ahead on this, I'm sending you a benefitsandwork membership voucher, so the option of using any of the benefitsandwork additional info is there for you should you wish to access it, without your having to do anything other than register the voucher with their website and enter their coupon number (to get 'instant free access as a full member for a year'). Apparently it's likely to take a couple of days or so for the voucher to reach you.If you should happen to already be a benefitsandwork member, I'd guess the voucher can be used to cover your next your next year's membership.With love, and also with apologies for my presumption, Peta

Why pay for advice when you can get it free face to face from Citizens Advice or other benefits help in your area?

...because CAB is so strapped for cash at the moment, the appeals team for CAB actually got cut mid-appeal process for me. Other benefits help is nearly non-existent. Yes, paying for advice sucks and seems rather counter-productive, but it's now one of the few options available. And if you can't pay for the advice...well, you're stuffed.

I do have a membership for benefits and work and while it's not exactly anything I haven't heard before, it's pretty vital information. I however am also willing to share that info for people who can't afford to belong to the site.

Anon: "Your car needs work"...yes, and how do you suggest she pays for that work then? Unless you're offering to do it that is, it seems a rather Captain-Obvious sort of statement.

We had the same problem applying for the blue badge. refused, appealed, refused again. appealed again but with a letter from the doctor and finally got the badge. I'm almost certain that they keep knocking you back hoping you'll give up.

Oya's Daughter - Cut half way through - that's really bad, they should have made sure ongoing appeals seen through. Complain to CAB, that's no way to treat a client! CABx are run independently so funding will be different depending on where you live and how good they are at fund raising (though I appreciate your point about cuts in general to CABx). Re "other benefits advisors". Again it's a postcode lottery, there might be disability rights advisors in your area.

Sue, so sorry to hear about this it's appalling to say the least. You do have to make sure you put yourself and your family first, we appreciate everything you do for the rest of us, but you come first. I can help online if you want to delicate anything out to me just shoot me an email and as soon as the fund opens back up I will donate what I can afford. My thoughts and prayers are with you.

You say that you have the worst/one of case of Crohn's in the country.

I believe that.

However, you also say that there are 3.2 million people on DLA!

3.2 million - and you are maybe one of ten with a condition as severe as you have it.

Surely, your ire should directed to the vast majority of the 3.2 million who can in no way have a condition as severe as yours. Surely it should be against the majority of claimants who in no way need to receive more money than the entire income tax revenue of this country (by definition insanity and non-sustainable): http://www.telegraph.co.uk/news/uknews/5651825/Benefit-payouts-will-exceed-income-tax-revenue.html

Surely someone like you should get angry with the vast majority of benefits claimants who, were there no welfare state, would be perfectly able to find some sort of employment or support structure, or would not have been sponsored into the situation they find themselves in.

And surely your husband would find it much easier financially if the state took less of his money and he had his own money to look after you/the children etc.

While the Labour people will paint you as a victim of Tory 'cuts', I think it is more pertinent to say you are a victim of the huge welfare state created, sustained and nurtured by all three parties (none of whom I support).

I am sorry for your condition and wish you the best for your treatment.

I really don't accept the argument that we disabled people should feel anger against those that get the allowances but don't really need it.

The arguments you trot out are worse than those peddled by many of the Tory Right. It's patently obvious that Sue needs her DLA to help her approach trying to lead a quality of life that most people enjoy.

Under what criteria can Sue be denied that right given her obvious illness and documented difficulties?

Sue, You are an inspiration for so many others like me. I can't offer practical help but all I can offer are my thoughts for you. And I'm angry. Still angry at how I've been treated by the system. So using that to fight for fairness and change is a pretty good legacy. Much love, best wishes, and moral, financial and political success.

Sue it is clear you must look after yourself first you have done more than your fair share already.Just another conspiracy theory please ignore “When the Earth is sick, the animals will begin to disappear, when that happens, The Warriors of the Rainbow will come to save them”. Chief Seattle 1854 The Earth is indeed sick and the Warriors of the Rainbow have indeed arrived.

Absolutely disgraceful. As some people have said it very hard to write without including some choice expletives. My son has Down Syndrome. When we first applied we were rejected straight away. I phoned DWP and was told quote "don't worry he will grow out of it". The person at the end of the phone was lucky I was not speaking face to face! I spoke to my local MP who wrote a letter on myself and my sons behalf. I appealed and was successful in getting middle rate care and higher rate mobility and more importantly an apology in writing.

2 months ago (nearing my sons 10th birthday) I have to fill out a new assessment for my son. This time I got letters from doctors, physio, schoolteachers. I also included what an average day entailed in looking after my son. His care needs in my opinion had changed.

I also included previous letters from them from the first time we claimed also the MP's letters and there apology.

This time it went smoothly and my son has been awarded DLA up to the age of 15 and a half.

Please appeal and do not give up. Go to your MP, CAB and if needs be your local or national papers The Guardian is the best bet.

Sue: when they send you the file that's sent to the Tribunal, you will see the reports from your GP. These are, AIUI, often used as evidence that things aren't too bad because GPs aren't trained to fill them in, needing to say things that aren't exactly asked for.

Also, I think you can guess that I'd say this, but if there's anything I can do to help with the research, please don't hesitate to ask. You know where to find me, Twitter or email.

I offer the same vitriol laced sympathy that the majority of posters here are venting. If there is anything I can do I'd be happy to do so, be it collating research, monetarily, general raising of awareness or whatever.

Is there any news of resolution with the PayPal issue? I had posted with concern (though I did not make this clear enough, believing that the linked story would make it clear enough) at the PayPal situation and got my head bitten off for my trouble.

'In the most infamous part of the Regretsy-PayPal exchange, the customer services representative told Killer that using the “Donate” button was more acceptable to help a sick animal than it would be to help children in need.

“What you’re doing is not a worthy cause,” the PayPal representative told Killer when she described the Christmas donations. “It’s charity.”

“What’s the difference?” Killer asked.

“You can use the ‘donate’ button to raise money for a sick cat, but not poor people,” the PayPal representative allegedly responded.'

PayPal only reneged after an online outburst of anger and there is something of a history of issues with PayPal releasing funds relating to their donation button after hitting high levels.

Now, if there are any further issues then perhaps using an alternative or multiple sources to raise or boost funds? Such as:

Nochex, Justgiving.com, moneybookers, charityclear, popmoney.

Worth considering in the event of a worst case scenario in relation to funding.

Mr Roshanwhere is the evidence that the vast majority of people getting DLA do not deserve it? As claiming it is not exactly a piece of cake and a lot of medical evidence is required I do not see how you can state that a vast majority gets money they are not entitled to.

Besides what people like you always fail to mention is that DLA is NOT an out of work benefit and many of the 3.2 millions are working and the DLA is the extra money to deal with the extra expenses of a medical condition or disability. Often to ensure they can afford the equipment and expenses needed to allow them to be productive citizens.

Suey - first of all, BIG HUGS. You need them for all you have done so far, which has helped so many people. However, why look on it as a choice between "The Needs Of The Many..." and "The Needs Of The One..."? I'd like to offer a small compromise solution.

You clearly spend a lot of time and energy doing the research towards fighting this callous Bill from a callous government. And you have unending determination and drive to see it through. But, you've forgotten one of the important facts. YOU are one of the 3.2 million you're trying to help. YOU need some of the help. Why not reduce your campaigning by a small fraction, just enough to complete your appeal form and send it off?

Don't let Them win over your own personal DLA case, or you've handed over an advantage to the very people you're trying to campaign towards/about. You SHOULD get DLA. They have no right to take it from you. The law is on your side.

Take some offers of help. Get your appeal form completed and sent off.

Sue, I'm so sorry to hear you've been turned down for DLA. It makes a mockery of what DLA was originally set up for - to help with the extra costs involved when you are disabled. Am gobsmacked by Cameron's comments on Christianity reported yesterday - by no definition is he "Christian". He hits the poorest and the disabled - how is that "Christian"? Please go on with an appeal, it is important for all. When I was refused DLA way back (1995ish maybe?) I felt like giving up, but went on to appeal in hope that it would add to case studies for others in my situation (I have ME/CFS) and make it easier for those who came after me. I've no idea if it did that, but I hope it did. My best wishes to you and your family and wishing you all the happiest Christmas you can have. Cyber hugs from Liverpool, Maggie (ladycatlover on Twitter)

Mr Roshan.First off what aload of bloody rubbish that article is...why do people like you come on sites like this?READ what is really happening to people in this country and PRAY that it doesnt happen to you although if it does when Call me Dave finally starves the country (including you) back in to some dickensian dystopia then seeing as you are to his extreeme right in your views you could nip round to his gaff and try doffing yer cap to the him and the gentry and avail yourself of his NEW FOUND christian charrrtidy dont yer know.But guess what they couldnt care two farthings about you either cos you aint a banker and you aint been to Eton SO WAKE THE FFFFF UP open your bloody eyes and see what is going on here..Otherwise just stay away you fool.Can you NOT READ this woman is ILL and needs help not your brand of trolling.

MEANWHILE Sue just let us all help where we can. After all i did mean it when i mentioned the SoliDarity thing and that should begin with us here first ....Dont listen to the trolls they aint worth the time WE are the ones who know whats needed not some hole dwelling t**t who reads the mail and other shit rags.God these people piss me off.Keep your spirits up ..or drink a few:)and again a million thanks for what you have done and continue to do...

10 million people in the UK have an illness or disability. 60% of them work. around 5 million claim benefits of which 3.2 million claim DLA which is a WORKING benefit.

Our Mr Roshan says I'm OK as I have such a severe case of crohn's, yet ignores the fact that even my case does not qualify for DLA.

It is incredibly hard to get and stressful to claim. It has the lowest fraud rates of any benefit at less than 0.5%.

There are lower, middle and higher rates of DLA care and lower and higher rates of mobility payments. It can be very well targeted and fitted to the illness or disability.

Finally, here are some figures that may explain why "so many" qualify for DLA 3.7 million people have lung disease, 2.6 million people have diabetes, 180,000 people suffer from bowel disease, 5.4 million people suffer from asthma, 2.6 million live with heart disease, around 300,000 people a year are diagnosed with cancer, 1800 babies a year are born with cerebral palsy, 640,000 people live with schizophrenia, 820,000 live with Alzheimers or dementia, 19,000 receive dialysis for kidney failure, 23,000 are deaf blind, around 40,000 people have suffered a spinal injury and 8,500 people suffer from cystic fibrosis.

Disability deniers need a few facts before they can make a credible argument.

Sue I can hardly believe what I have read here. 2 years ago I appealed, it went to tribunal and with the help of Benefits and Work (and the local authority's benefits advisor) I got my DLA reinstated. Not only that but I requested and won a domiciliary tribunal which is almost unheard of.

[QUOTE]sue marsh Disability deniers need a few facts before they can make a credible argument.[/QUOTE]

That guy is talking hot air sue like so many fit people when the time comes and they get bowel disease as most people will at some point in their lives there'll be talking a very different tune i can tell youI still remember helping a man who i met in hospital who was told he was going to have to have his bowel removed because of Sue's disease he was so shocked he went blind and regretfully committed suicide a few months later Never ever believe the likes of Mr Rosana as they and there type of people are so far removed from the real world and are heading in their lifetime for a disaster i have seen it so many times in the past i have lost count

The Gall of fit people who try to pass judgement on sick or disabled shows what a truly sick society we live in and am sure god will punish them at some point for being so uncaring and outrageous

If you have never ever experienced long term illness or disability you should always have the decency to keep your mouth shut “It is better to keep your mouth shut and appear stupid than to open it and remove all doubt.” such as David Cameron and the likes

I work for DLA, I'm sorry to read your story but as I've read in so many of the other posts on your blog, incorrect decisions are made all the time, the difficulties in gaining credible medical evidence is a problem in most cases, with the introduction of PIP and the assessments that I believe will take place should remove a lot of the erroneous awards of benefit that are made. Decision Makers for DLA are humans and can make mistakes and considering some of the claims that are submitted to us and the over exaggerated claims that are made some DM's do become cynical.

Crohn's is an awful disease, continue with your appeal and if I can be of any help please let me know.

What a nightmare: absolutely devastating for you. It's like a lottery and it shouldn't be like that. And when you read or hear those words from DWP there is nothing that can describe it - anger, injustice.... I wish you lots of luck in taking them on and don't give up - the 99 per cent are behing you and all the other people this Tory government are making pay for their greedy chums' excesses. Working people should not be made to pay for an economic crisis they never caused x

Send a link to all newspapers, television news teams and anyone else you can think of. Cameron, Clegg, Osbourne and company have pockets stuffed with cash. The people who take the full force of this crap recession are the people who need the most help. You shouldn't have to "fight" for the benefits you need. I appreciate that there are those who abuse the system but that doesn't mean that those who need help should be treated like criminals too. Maybe it's time we started a revolution. I wish you well and hope that everything gets put right, just keep shouting and we'll pass it on.

mr roshan-let me further enlighten you.DLA is a Societal recognition of the extra costs of having a disability,and as such given your comments you do not recognise that.The over one million pensioners that receive it will be interested in your thoughts concerning ability to work as will the many children.Indeed the many people with disabilities and illnesses who work and participate better in Society because of receiving it may have some thoughts on the matter.The support structures provided by family and ability to pay for services are being enabled by its receivership;it is the removal/reduction of DLA that traps people and words fail me as regards "sponsored into the situation".

DLA worker: I'd like to see the explanation of "credible medical records" in Suey's case, or even in mine or my son. It may be "Just human mistakes" for you, but these mistakes costs us health, sanity, and our livelihoods - in some cases, our lives full stop. "Just human" doesn't cut it when so much is at stake, neither does "having a bad day" or any other explanations about how the new system will supposedly be easier. PIP will remove a lot of cases full stop, including people who deserve the benefit, because they just won't have the energy to fight the tribunal. That of course in the figures will look very nice and tidy...but the stories behind the figures will be anything but.

If there's "anything you can do", it would be worth remembering that there are people on the other end of your claims, and that having a bad day and deciding to red-ink through a claim out of a fit of pique may be the defining point between whether someone lives or dies. When I said nearly a centimeter-in-thickness sheaf of paperwork in to back up my claim, I sincerely don't understand how the words of my carer, my son's school, two doctors and two specialists can just fall under "error" or "un-credible medical records."

I had my HRM and MRC removed beginning of the month. Thankfully, after a home visit and a reconsideration I have got the HRM back for now.Probably should fight on to have the care re-instated too but I am so scared they take the HRM off me again in spite !

It is a terrible situation and you have a lot of support Sue - keep fighting we need people like you.

If the DWP used medical evidence 99 percent of tribunal cases wouldn't even need to go ahead as we'd have our benefits awarded on our conditions alone. We wouldn't need to fight for what we deserve because the goverment seems intent on saving money.

This whole ESA Atos thing is just wrong, so many people, myself included are having to appeal just to get something we fully deserve, it makes me sick that the morales of the DWP/Goverment is so wrong that they would do this to people.

I have been on benefits myself for 10 years because of my condition, suddenly despite having a lot of evidence that confirms my disability and inability to work, some faceless nobody can decide my future.

Anon dla worker....the difficulties in gaining credible medical records in most cases.....wtf does that mean exactly.SO you are saying that you have more medical knowledge than all the doctors and other medical staff involved in these cases OR are you saying that you just dont believe them and the claimant in most cases.YOU want to help well get rid of this attitude amongst your people then as they are doing untold harm with this you know best attitude.Unless every one of you is an expert in any and every given condition then you do not know and you should realise that ATOS have a results driven agenda and that agenda is so very very wrong on all levels.If non of you can see that then one day when an illness hits you and you are forced to avail yourself of the very services you are involved in then you will see things as they really are and you had better hope that your medical records are credible and that the assesment you think will take place is one that is not skewed towards the agenda of a results driven multi national company and the govts agenda towards the sick and disabled.Be hopefull that you will still have your health and not face the prospect of losing your home due to this agenda.This is not a personal attack but IF you want to help as you say then really look and see what is happening out there and realise that people who are sick and disabled are very very worried and realise also that a couple of salarys away and this could be all of you too.The whole Atos machine is so very very wrong and if you are not part of the solution then you are part of the problem.Remember no job is safe and anyone can become sick or disabled at any time...

Sue, there is evident spite and malice here, someone has decided you are too effective as a Campaigner and decided to give you something else to do to distract you, to keep you busy with other things...knowing that you MUST attend to this. I have seen this tactic used before, it is an attempt to isolate and break you.

I suspect it also is intended to send out a message to all of us, cause 'trouble' and you will be punished.

Of course you will win on appeal, no one will be held accountable and you will have suffered terribly but during a key difficult time politically you will be distracted...it is presumably hoped.

The implications of this are truly dreadful and suggest that the rule of law is unravelling. You need support because this is also a test to see if you ARE supported, so make a BIG NOISE as everyone should about this....

Sue, I have no idea if your MP is helpful or as much use as a chocolate tea pot but I do know that if he/she is asked by enough of their constituents then they have to take notice....Who is your MP?As you say this news is going viral....well it needs drawing to the attention of those who can ask questions about what has happened here and get answers....It seem someone is intent on making an example of you and may instead create an unwilling 'martyr'......just make sure you focus on your own needs first, if you don't you will not be able to help anyone else...

Sue I think I'm going to loss my DLA as well once the changes come about. I'm on Mid rate just now but didn't know nothing about DLA until my social worker delt with all the forms from when I was in hospital. I don't get any support now due to the cut backs as the organisations have simply not got the hours. I am lucky though as do have good neighbours that have helped with shopping from time to time. I do hope you get yours sorted sue.

Sue, I just wanted to say that so many of us genuinely love and admire you for being so fantastic, giving us hope and fighting our battles. Don't worry, it will be sorted out and you won't go bankrupt. But you shouldn't have to deal with this. Kudos to all the CAB people helping others with this kind of fight; and if you work for DWP, please think about what is happening to the lives of ordinary, frightened people.

Hi... your donation thing still isn't working. It's the 19th and problems were reported on the 15th?? The error message reads "user cannot receive donations at this time".. or something :( Please let me know how I can give you money/when it is fixed. arwen dotty bird at gmail dotty commy. Thank you

Situation is similar in the U.S. Many people are rejected for no apparent reason. I was required to see a doctor other than my own at one point in the process, and he was very condescending -- he was basically there to deny people.

This is absolutely typical. This government is getting away with things that Thatcher could only have wet dreams about.

I'm only 3/4 blind, diabetic and long-term depressed (caused by 8 years of battling with various government agencies, including DWP, DLA, ESA, D(H)SS so naturally I am not sick enough for DLA, since if you can vaguely walk, dress yourself and cook yourself a meal, you're not entitled, but surely these mindless bureaucrats can see that someone like Sue is definitely eligible - whatever their stupid forms say! Just how ill do we have to be??

Dear Anon DLA worker, So to back up inches thick medical file FULL of credible evidence, you send around a doctor, who, after a mere 10 minutes, makes a completely erroneous diagnosis on the medical form, ignoring the diagnosis which has been there for the last 12 years...leaving me trying to prove him wrong and lodge a request for reconsideration within the 2 weeks over Christmas and New Year...

Appeal, and encourage everyone who's been turned down to do the same. They're trying to save money, so by getting it right the first time, they'll have to spend less dealing with the appeals.

Another tack to try - I have no doubt that ATOS get paid per assessment, regardless of what happens next. They need an incentive, so that for every successful appeal, they should get penalised at least the amount of an assessment fee, giving them an incentive to be aware it costs them more to just say no without properly considering the evidence.

Time and resource the DWP have plenty of im sure.Its disgusting but you may have to start being selfish as your health and family will always come first as i have found out.So take care and have a peaceful xmas and new year

Derekac I have had 30 years of the DWP so i know full well how you feel i have lost my life as my life has always revolved around the DWP how sad is that sure it has been tough in all probability the hardest thing anyone in the uk has ever had to deal with and unlike prison i have a full life sentence with the DWP

I dont get DLA but my claim for ESA has just been turned down,I too have bowel disease, A back condition , and just had a biopsy for skin cancer, The bastard that did my medical put 0 on everything on the form. Do I appeal or do I go on job seekers allowance? Theres no damn way I could work . You fight it , youre doing a great job, think of yourself hun,

i have no idea what to do , i have one more week of receiving my benefits. then what?

The MP will now face a tough fight to re-establish himself among the fiercely competitive 2010 intake after his sacking. He was present when one of the guests at the stag party was filmed saying: "Let's raise a toast to Tom for organising the stag do, and if we're perfectly honest, to the ideology and thought process of the Third Reich."

Please keep writing, tweeting e mailing the @dwppressoffice, all media press outlets and every MP or Lord you can find . It is especially important to let Liberal Democrat politicians know what sort of system they are supporting. Don't just get angry use the anger to do something positive.

@Oya's Daughter I've just read your comment regarding phone calls. I have been dealing with the DWP via the telephone and have been given the run around and SO many conflicting stories. My month runs out on Christmas Eve but I STILL havent had the paper work sent to me. I need a reconsideration/appeal as we have had the incorrect diagnosis put on the Med 3 form and have had an ESA85A back based on the incorrect diagnosis. I cannot get an appointment with the GP before the 3rd Jan. What should I do? Send in a letter of intent or a GL24 (even though i have verbally requested a reconsideration?) My apologies for all this but I'm a carer and this is the first time I've had to deal with any of this.

@ Sue - Your passion to put the research and activism first makes sense to me. I get that you're not doing all this "For you" but "For everyone". But I'm glad you're going to pursue your own claim as well, and I feel intuitively sure that that can become a powerful strand of the activism you're doing. For people going through the same thing, it's role modelling, and for people who "don't get it", the story of your claim helps to show them the reality of what's happening.

I am shocked by this news. Is there a fighting fund or anything we can contribute to? (I know most/ all of your readers don't have much money but if we all contributed SOMETHING it could help enable you to fight for yourself and us!)

This is so sad. This is what the Conservative party is all about and the Liberal Democrats are now part of this disgrace. All these cuts are being made to finance future tax cuts for the already wealthy. Their greed is insatiable and they take no personal responsibility for attempting to kill off hard working people who have fallen victim to illness or cut money to people with severe learning disabilities. I'm sickened by the mentality of this country.

Anon: Definitely send in the GL24 even if you don't have the paperwork back - re-considerations always come back as a "No, sorry, we're right, you're wrong" anyway. But it IS part of going through their procedure. You can still request all the notes and details which they have to give to you, and then I think the time limit on calling for a tribunal hearing is three months now. That's when you'll get all the notes the DWP used on the decision. Be brave as it will probably be clear to you they contacted absolutely no one and barely skimmed your medical notes and documentation.

However you've got lots of time to gather more evidence and find yourself someone who may even be able to act as an advocate. Again, do NOTHING on phone. Insist it's all in writing, get the names of who you've been talking to, and carry on.

I would be more than happy to help you with your research and I am an experianced public policy researcher. Delegate some of yuor work so you can do your appeal. As someone who has been a support worker for a long time the best advice i was ever given was this. ' You must look after yourself first or you cannot look after anyone else'. if you are not well because you are hungry or cold this will efffect your ability to do your work and undermine your noble aim. By looking after yourself you are looking out for others you support through your work. They need you do your appeal!

Oya's Daughter Thank you! I'm in tears here trying to make sense of all the conflicting advice. I will send the GL24 tomorrow via Special delivery - does it matter if there isn't a named person at the receiving end or should I try to get a name from the DWP? I'm trying to get help from the CAB and fully intend to complain to the GP practice, as it was a doctor from there (never seen him before) who made the incorrect diagnosis in the first place. To Sue and all of you - this blog is a lifeline for people like me and all your hard work is valued beyond measure.

Dear Sue,so sorry you have to join the vast number of people been refused from DLA,when I did appeal I found out they lost my ES50 and so they took the decision to cancell my DLA just on the Atos report and even if they give me extra 9 point bringing the total to 15 ,still my application was rejected,because I can stand for 1 min. unaided and can walk 6 metres in a straight line .There isn't any other option than to appeal I just wonder if is possible to take the DWP and the governament to the European court for Human rights as they are clearly infringing them

I don't have any direct experience of Citizen's Advice however I am happy to conclude that they do excellent work and are a much needed institution.

But the fact is that in my area the service is so in demand that I've never been able to speak to anyone on the phone and was advised that my best bet was to go and queue outside very early (being outside for long periods would impact my disability). I would have to get the bus there (£4 round trip) and I still wouldn't be sure whether I would get everything I need or whether I would need to go back again.

So I joined benefitsandwork.co.uk which cost me about £16. I found the advice very, very useful. For me, the equivalent cost of four trips to CAB and without any waiting times at all was worth it without question.

Had I even managed to get good info from CAB I might still have got home and suddenly realised that I needed more info and would have had to go back and queue all over again. For me web-based advice was much more agreeable.

In summary, then, it's good that there is a range of options for people to pursue and folk can pick which they find best for their own individual circumstances.

I would just like to say keep fighting for it. I have crohns disease too and have been unable to work since 2004, when i had to give up my store manger job. I was told by my consultant to put in a claim for DLA, i didnt think i would get it but i did, and then every 2 years i had to re-apply. Which i did until 2007 when i was refused it. This really confused me as nothing had changed, in fact things had got worse. I asked them to look at it again n was told the same, no. So i then took it to tribunal, after a whole year of stress, which caused me to have to spend time in hospital the tribunal finally came round. I will say it has to be the worst experience of my life. I felt like id robbed a bank or something. The guy from CAB said he had never been in a tribunal so bad and so long. Normally they last around 45mins, mine was nearly 2 hours. I was a wreck, couldnt walk and was in tears and so so much pain after it. But after waiting only 10mins i was told i had been awarded it back, and now i have been told i will get it for good. Well as long as they see fit for me to have it i guess. I was so annoyed and ill over the fight and i know if i had to do it again i couldnt, but thats why so many people dont fight it. Its those who really need it that get the hard time. I wish you all the luck in the world.

Reading how long it took you makes me worry about my upcoming tribunal, sorry to hear you had to go through that. If anything I just want a date for mine from the DWP, just its been 5 days since they recieved my appeal form + evidence and we've heard nothing.

A committee of MPs and peers has suggested that parts of the government’s controversial welfare reform bill could breach disabled people’s human rights.

We KNOW it does.

Disability Rights Watch is collecting disabled people's stories to send to the UN Commission on Human Rights. The government sent their report into how well they were doing with disabled rights in November. They neglected to mention the cuts to DLA or the terrible ESA medical fiasco.

Time to tell this story and all the others to the UN and see what they have to say.

My initial DLA was refused, then refused on reconsideration but I was finally awarded at higher rate mobility and care on appeal. It turned out that no medical evidence had been sought from my initial application, only my extremely 'optimistic' physio was contacted during the reconsideration phase. My GP was finally contacted during the appeal phase. My previous DLA application (prior to my diagnosis) had gone to tribunal and resulted in LRC. I was seeing a different GP then and his report was rubbish - as the form is almost a ticky-box form from the DWP. So this time around I wrote a letter to my new GP detailing a typical week for me (pain levels and dislocations and dizziness and everything) and the tasks I have difficulty with. She then used this to write a better report for me.

Sue are you aware that you can ask for an internal review where they get a different DLA advisor to examine your paper work. The other thing is to ask for copies of all the reports that they have received that they are basing this result on.

My son (ADHD and Aspergers - then aged 7.5 yrs)was turned down and when I read the reports I realised why. The Consultant's report was 2 lines of illegible scrawl and the school report was written by a probationary teacher who had never filled in one before. By sending in the original diagnosis letter (3 pages of typing) from the same Consultant and getting as many other reports together as possible from other professionals my son was finally rewarded high level care and low mobility.

It only took about 6 weeks and I was told it wouldn't affect our right to appeal if necessary afterwards. I was told that for an internal appeal the DLA would not ask for any more paperwork but they would consider any new reports/evidence we wanted to send in.

what i can say and this is directed at all in the DWP /ATOS and those who make up the rules like IDS and Lord fraud etc

One day you will become ill and that's a fact the same for your families so you need to think very clearly about these reforms as they will catch up with all of you and the last thing you'll need is to feel guilty about all the suffering that you have caused over the years past and present as it will destroy you and your families just like all of the families that you yourselves have destroyed so take it from me get rid of these evil thoughts learn a lesson from Hitler in the war don't go yo your grave knowing that you were evil and do the right thing for the sick and disabled to enable them to live a independent life as much as possible free from worry free from hardship and free from poverty

Its disgusting, the tory government are just doing what they always do, change the name and kick a lot of dibilitating conditions off so we are left with nothing. I have severe mental health issues, just been informed because of cuts i'm losing my care co-ordinator and they don't know whats going to happen, trying so hard not to relapse and undo all the good progress, with these DLA proposals i simply won't be able to go out, become isolated and just don't bare to think..

Hi Anonymous (who addressed comment to me),Yes you're right, in your situation waiting outside & the trip plus expense etc. made other options better. All CABx are run independently of each other so some have huge problems. Re having to go back, once you have queued initially you would be seen by appointment, it's just that first contact. We always advised people to turn up early with urgent cases. Best wishes.

Sue as one disability campaigner to another you have to put yourself first.

This does not mean you care less, or have to do any less but if you go under due to no DLA ect you will be able to do little for others and yourself.

I pace myself, have to as would collapse, I want so much to do everything I possible can to help every single disabled person but if I cannot look after myself first what message does that give out?

We all need support at times and we all need to delegate such initiatives, share the load, take up the offers of help.

Sometimes we also need a total break, away from all campaigns.

I try to help many but if I do not also address my care needs, housing, medical appointments, tests and treatments, manage pain levels and medication I could not do anything.

Its important to look after oursleves,becasue its not about helping the vulnerable its about empowering ourselves and others to do things for themselves too.

We are all vulnerable when people target us for abuse, but the way we respond and deal with this, the rights we make claim to, the knowledge we have of an injustice is what motivates us to continue fighting.

But it is a fight that can only be won by working together, supporting each other when times are tough in all sorts of ways.

So Sue what can I do to help you, make a list for us all to see, even home help things, anything.

@anonymous Matt, yes it was a horrible year but so worth it. I hope that you dont have to wait as long as i did, but like alot of others the medical info that was sent was next to nothing from GP surgery. Problem with GP's today is they have too many other people on there records, most of the time i see one gp as i ask to see her as she knows me. But when it came to filling out my DLA forms it was the head GP who no one can get to see alot as he is just so busy. My advice is to see your GP yourself and ask them to write you a letter, if they cant do it there and then make sure you take some info with you, like a diary. That way they can see how it really affects you, if you are all like me then when i see my GP i play things down alot, otherwise i know i'll be admitted to hospital. Doesnt help when your trying to claim DLA but i only go GP now when i really need too. Good luck to everyone, and please dont give up, its a hard fight to fight with people who just dont understand.

I'm a gp and it makes me feel nauseous hearing tales of patients very similar to the author's with extensive past medical histories, and unable to cope; who again, have had their benefits stopped. the current system isnt fit for purpose and the government should take note, roll on the next election. As part of our role, I often write letters supporting individual patient's appeals and this has helped in several cases, so always worth speaking to your regular gp to help you.

This government are a discrace we need them voted out Now ! sadly that wont happen and most if not all of us WILL at some point loose our key benefits which puts the fear of god into me.I have been suffering and i use the word suffering to explain the severe pain and lack of mobility i have had for a lot of years now as thats the truth of the matter, i have been on CD for man years being in a state where i have to not want to take them daily or the pain levels get unbearable? now i am suffering daily blood loss as doubtlessly something else inside is objecting to the use of said drugs yet i have a few days where i can hobble about on my stick/s i am most certainly not getting any better that much i do know, worse most certainly, i have a degenative muscle wasting desease amongst eyesight and other issues none of which can be cured nor in fact aided very much it would seem, as such i rarely see my GP's as i know they is little if anything they can do for me, i barely sleep, i fall frequently and am generally quite ill, and now i have to endlessly worry about just when the much needed money will stop, that only just covers costs as were most certainly not becoming millionaires on the back of DLA or SD/ID benefits thats for sure.Our nearest CAB/DWP etc offices are a 80ml return journey away which also puts the fear of god into me just the thought i was unable to speak to CAB last time i had issues, my GP sees me irregularily, im currently awaiting seeimg my specialists again after a good while of not seeing then as there was simply no need all of which looks like a case for instant refusal but worry not as it will put me into an early grave anyway and then they will not need to worry about me anyway how much more both myself and others like me can take i just dont know..

It is a crappy time to be disabled. The support workers are cut, the care co-ordinators are cut, the care managers are cut. I have a brain injury and as such look normal. I was moved from IB to ESA and am now going to job centre to try to get me ready to work as my contribution ESA is going to run out. I have reports from neuro psychs and neurology consults that say due to my problems i would be extremely unlikely to ever manage to gain employment and less likely to keep it. I volunteer a few hours a week but that wipes me out and i can't do anything for days. I will lose my CESA and my other half will have to magically create money for us to manage on.God help us when PIP raises its head. I have no support workers anymore so who will write reports to support me. I dont need to see any medical people as i am as recovered as i can get and no medical intervention is needed. I see my GP only if i really have to. I feel let down and angry. I hope you get your DLA sorted and i am thankful that there are people like you able to put into words to fight on behalf of people like me.

It is my estimation that this government is setting about redefining 'disablilty' in purely economic terms. People are no longer people, merely economic instruments. Unless you are dead you have no chance of getting benefits.

There is no doubt that to meet their budget considerations either people currently eligible for DLA will no longer be in receipt of it (thus numbers reduced) OR disablity redefined to make awards less for all. Some combination of the two will no doubt occur - indeed has commenced.

They are removing the welfare state as defined in the 1944 Acts and they are removing the word 'disabled' from our vocabulary. Meanwhile, the latest round of bankers bonuses is due to be released ...... and MPs increase their rights for lunch subsidies to ,ore than £8000 per MP per year!!

I know DAB and CAB do the best they can, but my husband and I both know from experience there participation can end up as being less than useless, not because they haven't tried and don't know the system, but because the tribunals are constrained by guidelines set out by DLA and in no way reflect the ideology of being "independent." In my husbands case, he suffered 2 CRITICAL heart attacks whilst working abroad. His company refused to pay for important angioplasty, and the Dr's in the middle east informed him stridently to see a GP in UK and get immediate referral to specialist. When he finally saw the specialist, 4 months later, he was told by the specialist (after seeing the medical documents from the middle east) he would do no tests, and would not even look at my husbands case for at least 6 months. We were astounded!!!! When he did apply for DLA, this left us with no support from either GP or Specialist, for application. He was refused, and appealed. When we say a DAB officer, she wrote to both, (in the meantime his specialist had immigrated to australia and he was awaiting an appointment with new specialist), and two days before the tribunal told us she hadn't heard back from either. We frantically contacted the specialists secretary, she frantically tried to get us a letter, when it was finally done (the morning of the tribunal and too late for us to pick up), the tribunal refused to let us consider a phone callto the specialist, or a fax, in fact the DLA representative who was at the tribunal to "observe" was allowed into the deliberations; and he was refused again. Although it must be said the tribunal was "disgusted" by the DLA's arguments. The letter arrived at our home 2 days after the tribunal.

Especially in this case, the DAB officer was useless. DLA has rules for one and none for anyone else. They should not have been represented in the deliberations.

3 months later we tried again. Dr. wrote to all explaining that "Mr. **** suffers from irreparable damage to his heart, due to heart failure, that neglect on the part of company etc, left him with dead tissue reducing the efficiency of his heart to 20% or below, and that the stress of paperwork, interviews and tribunals were an unnecessesary risk for his patient. He did get DLA, but only mobility. I am also disabled, severely, but between the two of us we manage. But when I was bedridden we actually experienced the complete impact of his illness, as he found it nearly impossible to cope without my limited help. We only have each other.

It helped in his reassessment which came in October last year, as he was awarded both levels, middle and high. But now, we are both in jeopardy! We have indefinite awards, but the introduction of PIP is now impacting on both of us. Our health, mentally and physically has deteriorated significantly because of the stress. And the now "scrounger" mentality of the general public makes it very hard for either of us to feel happy or comfortable putting our heads out of doors. Managing to have a day when putting out the trash is not a strain, can be construed as a "scrounger" lifestyle. We are both terrified!!!!

I hope I don't offend anyone by saying this Sue. I am praying for you right now. I am in a similar situation right now and am thinking of quitting altogether. I only have God left. I get a lovely feeling of assurance knowing that he is holding my hand, helping me through my deep depression. HE knows how I feel and it really helps. xx

Hi Sue, I understand how you feel . I am profoundly deaf and I have panic attack and agrophobic .. It is awful . I was on incaptical benefit but I got the letter last year Summer I had to go ESA assessment at wolverphamton. I start get stresson the day of assessment make me panic attack I can't do travel w'ton about 25 miles from my home .. Ask social worker phone for me explain my problem put other date go to w'ton again I still can't do on the day so they try put me Stoke on Trent(21) I have copy of my GP letter explain about agrophobic but they seem don't care .. On the day at Stoke I still can't do out of control they sent me letter explain why I can't do go .. Stupid They can't read GP letter .. I prefer ethier home visit or my hometown I will be fine. It is hard to explain them I have mental health problem and now suffer from anti -depression.I blame welfare benefit effect my health suffer now .. I cannot travel too scared . Two years ago (2010)I was improvement and happy, successful Graduation BA (HON)Fine Art 2:1 at Staffordshire university I have no panic attack brillant .. I travel to wales for my graduation present from my partner few days It was fab .. 2011 is my worse year I become withdrawl travel increase panic attack because over the simple benefit letter assessment. I am very angry because I was plan to looking for work part time but not now my life ruin why me now !! They should pick whoever not bother go work and can afford holiday aboard and new car. I never had decent one ..

£70 of petrol on a 130 mile round trip, what are you driving, a tank? As the former owner of a Supercharged Jaguar XK-R 4.2ltr car, even with my heavy right foot on the gas I could not spend that amount of money on a 130 mile round trip...!!

For reference, the Jaguar XK-R consumption figures are:

Urban 14.8 mpgExtra Urban 32.9 mpgCombined 22.9 mpg

Now, even if I took all urban roads at max consumption of 14.8 miles, was buying petrol at £1.40 litre (£6.36 per gallon) and it would cost just £55.90 and these figure are in the conservative side as I pay around £1.34 a litre (£6.08 per gallon) it would cost £47.93.

Now lets assume over a distance of 130 miles you are travelling combined Motorway/Dual Carriageway/Urban Roads, then I know my car would on average return around 24mpg, therefore it would cost me just £33.61 for 130 miles... so please, if you are going to post costs, get the figures correct as I assume your figures are £70.00 to fill the tank of the car, but I bet you use less than half of that for the journey and it just makes us Disabled People look like a bunch of sroungers...!

Really, Anonymous (Jan 11, 2012)? Her petrol costs are what you chose to focus on here??? And you got it wrong. The hospital is 130 miles away, not a 130 mile round trip. Why not get *your* facts straight before lecturing someone else on the correctness of theirs?!

Sue - I was diagnosed with MS last year. I have friends who suffer with epilepsy, Crohn's, coeliac disease, deafness, arthritis, partial sight, etc. Not all are in receipt of benefits (I'm not), but that doesn't mean they won't require assistance in the future. I don't know what MS holds in store for me, if I'll be able to carry on working for the next 20 years, or if I'll end up in a wheelchair requiring care of some sort. That remains to be seen. I'm a single person living alone. I have no savings and no family. I am all I have. I worry what might happen to me if I'm unable to support myself. This government doesn't seem to care about anyone and are very quickly stripping away everything that previous governments worked to put in place. These are sad times.

I appreciate your efforts to raise awareness and wish you continued success with your campaigns. Keep fighting the good fight.

It really depressing to read all this and to find - "help and support" from agencies, disability orgs, deaf orgs,,,,,lacking in the pro activity. I too have DLA and it will be stripped when the 5 year time is up and I still fear going through the mill fighting for my rights in a system that doesn't care for humanity. I am born profoundly deaf and have less equal opportunity in society and "communication" is critical but "they" will not accommodate. Most of the time I find having to do all this "alone" and this is wrong.

It's very brave of you to be pushing along as you are. It seems so heartless to condemn otherwise good honest people to a life of probable poverty 'just' because they were unfortunate enough to develop serious health problems.As an MS sufferer myself I'm extremely worried about the assessments as I'm sure they'll conclude I'm not entitled to the DLA I receive at present. There are so many hidden factors with most of the diseases covered that their forms can't possibly take them into account and people are being driven to destitution as a result.The DLA was set up to protect us, it seems it's function now is to destroy us.I'd like to appear as optimistic as yourself, but politicians these days are mainly 'career' minded and we are just statistics that get in the way of their 'targets'.

My heart has literally broken for the 2nd time today I have just found out that my daughter has lost her dla for type 1 diabetes and having read this I am lost for words. Reading this now I feel my determination to fight this and help others who are in the same predicament, they may have terminated the dla here but they are going to choke on me as a means of a huge thanks for being sodding idiots. If there is any way I can offer assistance to you please do not hesitate to let me know

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.